Codes and Explanation of their Use
"Finding Consumers and Carers: A Guide to Sourcing Consumers, Carers and Community Members for Collaborative Health Service Improvement" provides information about the various ways in which consumers from different groups and organisations prefer to participate. It will help ensure that consumers are involved in ways that are supportive and appropriate to their interests and needs and that meet the needs of health services.
Each of the organisational entries is divided into sections entitled:
- Level of involvement
- Type of involvement
- Focus of involvement
- Recruitment, selection, training, support & mentoring of members/consumers and carers
- Assistance required for a consumer/member and carer to participate
These headings and associated codes are explained below.
Level of Involvement
This refers to the level at which an organisation has an interest in being involved. Some organisations are interested at the national, state and local levels so the word "All" appears, others have a preference that is listed in order of that preference. "Local/State" would indicate they do more work at the local level and some at the state level.
Type of Involvement
This refers to the consumer participation activities the organisation believes their consumers are interested in, or have participated in, in the past. Each of the activities are listed in an entry to indicate that organisation's preferences. The codes are as follows:
- responding to/commenting on papers, facts sheets, web sites, education packs
- questionnaires and surveys
- representatives on boards
- membership of advisory/steering committees/reference groups
- focus groups
- individual and group interviews
- panels
- public meetings
- workshops/seminars/conferences
- training/education activities
- advocacy
Focus of Involvement
This refers to the main area of interest in health care delivery. For example, an organisation might be interested in policy development such as:
discharge management in a large acute hospital
improving an individual's care at the service planning level, such as the development of protocols for the care of colorectal patients or
providing training to staff members on the experience of a person with a sensory disability
The categories are as follows:
- evaluation
- feedback
- policy
- quality
- standards
- research
- ethics
- strategic planning
- service planning
- training
- education
The focus of involvement will be listed in the entry.
Either the code or the focus of involvement will be listed in the entry.
Recruitment, Selection, Training, Support & Mentoring of Members / Consumers & Carers
This section explains how each organisation recruits consumers to be involved in quality and safety activities. Some organisations describe themselves as having formal processes and others have informal processes responding to each request individually. Organisations that have a formal process tend to be those organisations that regularly access their consumers/members for quality improvement activities in their own organisation or in health service or government projects. Organisations also provide information about the availability of members and what might restrict their involvement or availability. For example, if they are carers they may need to organise alternate care, or they may have mobility issues, or work full-time. Where there is a varied membership the entry will state membership availability is varied. Each organisation states whether it can support a consumer participation project through training, support and mentoring.
Health services can improve the experience of involvement for both the health service and consumers by:
- allowing sufficient time for recruitment and orientation prior to the commencement of a project as this process can take some time
- providing a single point of contact within the health service where consumers can seek information and advice about a project they are involved in
- ensuring consumers are provided with all relevant information about the project or activity they are involved in including any constraints or limitations and
- clarifying roles and responsibilities when recruiting consumers.
Assistance Required for a Member/Consumer and Carer to Participate
These symbols refer to the assistance a consumer/member might require to participate effectively. For example, if the health service is running a focus group, the consumer may require their travel to be organised and/or paid for, and remuneration for attendance (
& 
), or if they are attending a meeting they may require attendant care, time for reading materials and materials produced in a format which they can understand (
, 
& 
). These symbols act as a guide to consumer needs but health services should check with the individual or group of consumers and carers when negotiating their involvement.
The symbols are as follows:
payment for time at meetings and preparation time
reimbursement of costs (travel, childcare, carer/respite, attendant carer)
carer/respite, childcare to be offered
responsiveness to special requirements including dietary, transport
orientation to organisation, health system, main issues, and mentoring by a staff member
refreshment
administrative support
written material in easy English and supporting documentation supplied, if the document is lengthy an executive summary needs to be provided
translation and interpretative support
time for reading and/or to gain input from membership/board of management
project responsiveness to individual needs of participant including, time during meetings to understand and to ask questions, acknowledgement of the ability of member and their disability, meetings held at a time convenient to use public transport
staff, attendant carer or support person of family member to assist in travel to the project and or participation in the meeting
hearing access (or hearing augmentation) for example an audio loop or note taker
materials produced in a format which meets the requirements of the particular individual e.g. large print, audio, Braille, in an appropriate format for disk (word or plain text formats)
meetings are held to time (often respite is booked for set times or people need to catch public transport)
assistance with writing, and reading holding and turning pages
payment for staff time in recruiting, selecting supporting and mentoring participants
two consumers or carers rather than one to attend meetings
